• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. H

    Any Ampligen updates?

    Has anyone enquired about getting Ampligen in/ from Argentina? My doc said if I can get some he will give it to me.
  2. H

    Me/cfs doctors in Sydney, Australia

    FYI on "Insight" on SBS this coming tues night 16th October they are discussing CFS. Dr Donohoe is the first Doctor talking in the preview. Here's hoping this brings some more awareness!
  3. H

    Me/cfs doctors in Sydney, Australia

    He hasn't gone there with me yet.
  4. H

    Me/cfs doctors in Sydney, Australia

    Sorry, a bit jumbled Indicative of my brainfog. Will correct tomorrow.
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    Me/cfs doctors in Sydney, Australia

    Hi Deuce, sorry I've taken so long to respond. Looks like you have done a good job of seeing a varied cohort of doctors. It's such a tough gig to find a doctor who suits our particular circumstances. I understand how you feel about long term antibiotics. I was on tetracycline antibiotics for 10...
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    Me/cfs doctors in Sydney, Australia

    Hi Deuce, Dr Donohoe is a very nice man. It cost me a lot as he talks a lot! I kept having to try and get him back on task which wasn't easy to do. He did a lot of testing, including the "Lyme" test for the Australian version. This test is controversial but when it became available a friend who...
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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Hi Ahmo, Thanks for that. A very interesting read. My problems have also now passed (thank goodness!) . Since I began going to a chiropractor who works on freeing the signals of the nervous system I have really improved. From the very first day I had improvement. Still have a long way to go but...
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    Me/cfs doctors in Sydney, Australia

    No I didn't have any adverse reactions. I am very fortunate that I don't usually have bad reactions to supplements or medications like some others do.
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    Anyone tried circulation boosters eg: revitive.

    I am thinking of buying a revitive circulation booster. Before outplaying so much money I wanted to see if others have tried these machines to improve circulation and what their thoughts are. I wouldn't imagine it would help the pots but am hoping it may improve the leg pain. Cheers Hotch
  10. H

    A New Data Point?

    I think my Mum was well but she became pregnant with me just after she lost a baby at 2 days of age. So she was grieving big time and obviously very stressed. I was born premature and so weak she was told not to let me cry and had to feed me 2 hourly. We don't know how premi I was as she never...
  11. H

    Are you able to drive?

    I hadn't driven for 8 months until last week. Reason was lack of concentration/ awareness made it very unsafe. Sometimes not noticing lights at all. I also would get confused about which was the accelerator and brake. The shock of going through a red light or accelerating when meaning to brake a...
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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Hi Lissyleigh, I used to have urinary frequency for years. I would be up 4-7 times a night and very frequently during the day, sometimes not making it to the bathroom. I too believe it was worse at times when I was weaker. I no longer have much of that problem anymore. yay! Maybe, as...
  13. H

    New exome testing $400

    Excellent. Look foreword to hearing about your results! Cheers
  14. H

    New exome testing $400

    Hi Alicec and Sea, when are you expecting your results re above testing? It's very exciting!
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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Sorry I have taken so long to reply. The silly season took its toll on me. I hope you all managed to enjoy some of the holidays. Thanks everyone, helped a lot! Problem significantly improved. From what I have read, another name for the sphincter having a mind of its own is Neurogenic Bladder...
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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Thank you all so much! Such great information from everyone! Hip I will reply soon. By the way how do I get the italic "@Inester7 etc to come when I am replying to each of you? @Inester7 I too have OI, not diagnosed yet. I have been doing poor mans tilt table testing at home and recording to...
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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Thanks Iansbergen for suggestion. Appreciate it. Unfortunately, I basically do but to no avail.
  18. H

    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Hi All, Urge incontinance has become a huge problem for me. I think I now need to carry a whole new set of clothes in a backpack when I go shopping or anywhere. I have had a problem for about 4 years but since I have become extremely thirsty over past 6 months the result is a flood ( sorry if...
  19. H

    How to Beat Candida PERMANENTLY

    I am so confused about the immune system in Me/CFS. I NEVER get sick. I do not have the flu like symptoms most have often. However, I have all other symptoms on Canadian symptom thingy ( sorry, can't think how to express it) constant exhaustion ( bed bound/ home bound half week. Other half may...
  20. H

    How to Beat Candida PERMANENTLY

    Thank you so much for this info. Have you used this method and had success? Cheers Hotch
  21. H

    Fluge re: L-Arginine with L-Citrulline as alternative for a NO donor

    Thank you everyone for your quick replys. I really appreciate it. I don't think I will try l arginine etc after what you have all told me. actup I look forward to hearing how you go on Imdur. Good luck!!!! I am considering seeing if my GP will let me try it. Problem with Imdur for me is it...
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    Fluge re: L-Arginine with L-Citrulline as alternative for a NO donor

    Hi All, An ME/ CFS sufferer had a transient ischemic attack. Her cardiologist started Imdur 30mg for 5 days. She experienced significant symptom relief from her me/CFS symptoms within 24 hrs of beginning Imdur (an NO donor) which then returned when treatment was stopped. She was one of Fluges...
  23. H

    First sign of Recovery

    Hi Purrsian, I am one of your mob too. I can't remember getting any cold or like in over 10 years ( have had CFS 32years at varying degrees. Currently mostly house/bed bound). Why do you think that is? Do you think our immune systems are exhausted so can't mount a fight? One of my doctors said...
  24. H

    Does anyone have any experiences with Dr. Peterson of Incline Village?

    Hi GlassHouse, I can not find Dr petersons email address. I live in Australia but am seriously considering going to see him. Hence I have asked my son who lives in Nevada to phone his clinic and ask some info. He said he will ring this week. I would much prefer to contact him myself. Could you...
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    Can You Work?

    Hi Rose 1, I am so glad to hear the blood pressure meds are making a difference for you. I wonder if it could be worthwhile buying a blood pressure machine. This might shed some light on what is going on at the times you are lightheaded and have wobbly legs. Have you been to the immunologist...
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    What's your CD4/CD8 ratio?

    Hi SOC, I found the Phoenix Rising site a couple of months ago. I have found it fabulous and particularly love your posts! You seem to understand a lot about this terrible illness. I have had CFS for 31 years. I live in Australia where our testing and treatments seem to be behind. Hence, we do...
  27. H

    I'm 100% better, can function again

    Hi Tammy, So pleased you are improving!! You go girl!! I would love your protocol! I have just begun valtrex 3 days ago. I have previously done oil of origano periods, which I loved and is the only thing that has helped my candida. Then Pau d'arco and olive leaf to keep candida under control. I...
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    Hemochromatosis. Iron overload- A common gene mutation

    Hi Paralee, Thanks for that. I did not know. I actually do get sore wrists sometimes and thought I must have been doing something that was hurting them. But maybe not! Funny you should say to look at my calcium level, I am having a blood test next week that includes free calcium. Do you have...
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    Do I need to treat CPn before virals?

    Thank you invisible Woman! That is very helpful. My first line of treatment at the moment is candida. The dr said it was rare to see such an incredibly high level. Candida is on the list of opi's for IRIS on one of the links you provided. I might hold off on the antiviral for a bit and think...
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    Do I need to treat CPn before virals?

    Hi All, I have EBV, HHV6 and Clamydia Pneumonia on the bacteria/ virus scope. I am about to begin Valtrex for EBV. I have read that you should treat the bacterias before the viruses when going to use Valcyte. Do you also need to do that before Valtrex? I ask because I don't remember ever having...